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22
hrmonline.com.au
GENE JEANIE
Where do we draw the line on what is legal and ethical in the collection
and use of genetic data – and how will human capabilities be affected by
technological advances in the future?
BY PROFESSOR PETRINA COVENTRY, FAHRI
“My father was right. It didn’t matter how much I lied on my
resume. My real resume was in my cells. Why should a nybody
invest all that money to train me when there were a thousand
other applica nts with a far cleaner profile? Of course, it’s illegal
to discriminate, ‘genoism’ it’s called. But no one takes the law
seriously. If you refuse to disclose, they can always take a sample
from a door handle or a handshake, even the saliva on your
application form. If in doubt, a legal drug test can just as easily
become an illegal peek at your future in the company.”
Vincent Freeman (Ethan Hawke), Gattaca, 1997
IN 2014 SMARTPHONES TRACK OUR MOVEMENTS
and habits and web searches reveal our thoughts.
Self-driving cars, drones, and robots will soon record more of
everything we do.
With wearable devices and medical sensors connected to our
smartphones, information about our physiology and health is
entering the public domain.
The question is where do we draw the line on what is legal
and ethical in the collection and use of that data? Who owns it,
who can access it and for what purpose?
Current laws dealing with how companies gain access to or
use aggregated genomic data are incomplete. Organisations
could use that information in the same way that lending
companies and employers use social-media data, or how
marketers can target ads at people with genetic defects.
Without regulation around the collection and sharing of
genetic and health data in organisations there is always a risk of
a ‘Gattaca like’ workplace eventuating where only the healthiest,
fittest and most youthful pass the employment test.
‘ Fit for work’ tests and health checks are commonplace in
most companies, they are used to track organisational and
individual employee information and fitness. If we can measure
and use a person’s weight, height, or medical condition to make
workplace decisions, what stops us taking that to the nex t step
and using genetic data to do the same?
Genetic discrimination occurs when people are treated
differently because of the genotype of a person rather than their
individual merits.
In the US, genetic discrimination laws have been in place
since 2008 and bars employers from using individuals’ genetic
information when making hiring, firing, job placement, or
promotion decisions.
In Australia we have yet to come to a consensus on how
private medical data can be collected and shared and the law
is lagging behind advances in technology. Laws typically take
years to be enacted and technology changes rapidly, it does not
wait for democracy or for the courts.
A case in point is that even as we struggle with the issue
of genetic data, a new issue is rapidly developing in parallel.
‘ Transhumanism’ is where individuals use technological
advancement to enhance human intellectual, physical and
psychological capabilities in order to gain an advantage.
Characterised by the A merican political scientist, Francis
Fukuyama, as among the world’s “most dangerous ideas”,
its application may be closer than we think. If used to gain
advantage in the workplace, for hiring or promotional reasons,
then social justice is at stake.
The debate has centred around enhancement options being
made available as widely and as affordably as possible. But I
would suggest there is a different and earlier argument, and
that is, should genetic information, genetic disposition, or
technological advancement of a person’s physiology really be a
consideration in the workplace at all?
This may all sound surreal, or space age, but if you consider
that a decade ago a full human genome sequence cost $100
million and today it can be done for $1,000, we don’t have time
to ponder this issue, patience is not a virtue in this case. We need
to develop regulations and the human mind at the same rate
to ensure we protect individuals and maintain a strong social
conscience.
Achieving that takes greater ethical and moral education
available than we are providing today, and to a broader
audience.